I had an existential crisis when I was recovering from my first aneurysm coil because I couldn’t work the way I was used to working or learn at the pace I was used to learning.
I’ve struggled with complex mental health issues and chronic illness my whole life. I was one of those rare female tweens diagnosed with ADHD in the mid 90s when most diagnoses went to boys. I survived domestic violence as a child and later as an adult. So I’m no stranger to instability and inconsistency. Despite this, one of the things that I always defined myself by was my work ethic.
Before foster care, I grew up in a home that prized academic achievement and entrepreneurship. The surest way to receive affection, pride, and recognition from my father was to offer to provide a service or do work that wasn’t part of our typical chores. I asked my dad to teach me how to rotate his tires, change his oil, and replace the filter in his carburetor. That way I could do it for him and save us some money.
Later, in foster care, I often felt unwanted, unseen, and dispensable. My foster families had a different view of the fact that a 12 year old was ready and willing to do so much work. It was seen as a consequence of neglect, and I was often denied opportunities to do chores and take on responsibilities that I was used to having. For recovery. It crushed me.
There was an escape, however. I got my first job when I was 14, and I’ve been working ever since. At work I felt the same rush I’d gotten from seeing my dad recognize me. I got early and easy praise for my work ethic and value to the workplace. Before I was 18, I was often working multiple jobs just to chase the high of external validation I had craved from my caregivers and never received. It’s the same reason I did so well in school. Academic achievement earned me recognition and care from my teachers.
No matter what I went through, I was always able to work and learn. That was what defined me at my core because it was what made other people treat me as worthy.
Recovery from an aneurysm coil is rough even when things go well. If you do a quick Google search about recovery times, you’re left with the impression that someone is back to normal in as little as 3-5 days. The reality is that this is just the timeline for your incision to heal enough to weather daily wear and tear. The neurological effects of the surgery can persist for months or years.
That timeline grows with complications. I bled during my procedure, which caused profound recovery complications. The fatigue was intense and lasted for years. I’d have intense mood swings, periods of confusion and brain fog, and difficulty trusting my partner. It was like a completely different person was hijacking my brain and body.
It was hard to tell whether I was sleeping more because the shame of my outbursts was making me depressed, or my brain was just healing and needed more sleep. I would start a day feeling refreshed and energetic, only to crash an hour later and feel like I couldn’t get enough sleep. I went from needing an average of 7-9 hours of sleep to function to needing 12-18 hours of sleep. Even then, sometimes I would need to nap so suddenly and urgently that I didn’t feel comfortable driving safely.
How was I supposed to work if I had to sleep 12-18 hours a day to recover? How could I be dependable if I never knew when my body would suddenly decide it needed a nap, like, NOW? I had no way to know if I was going to be able to meet a deadline or make a meeting.
Not being able to work or complete schoolwork reliably while I recovered presented an existential crisis for me. Who am I if I’m not working? What value do I bring to the world just by existing? Is my brain broken now, and I’ll never learn anything new ever again? I was haunted by the idea that I was nothing without the ability to provide value and understand the world around me.
This is actually more common than most people expect when it comes to disability. Qualitative and quantitative studies alike have shown that disabled people actually want to work, and are frustrated by the lack of accommodation and understanding they need so that they can work.
Dependency narratives have driven the idea that people actively seek out reasons to be disabled so that they can coast through life. As narratives go, it’s not just wrong, it’s disgusting. It completely ignores that all humans are driven by curiosity and a desire to create through vocation. It also ignores how much work it actually takes just to keep your benefits and get the care and resources you need to live as a disabled person.
That’s not to say humans aren’t also lazy. A good chunk of innovation has been driven by the idea that something could be easier. What I’ve always noticed, though, is that most of that lazy-driven innovation is done in service to a greater good: people want things to be easier so that they can do more work, faster.
It’s something that’s obvious to me, and so I often assume other people know this too. It’s our biological impulse to work and be productive and helpful that makes so many of us easy to exploit. We want to help each other. We want to create and compete. This all requires work. Organizational psychology unintentionally hands the wealthy the tools they need to exploit these desires for profit instead of health.
How capacity signals get lost in productivity noise
For me, part of the problem was that I kept estimating my capability based on my pre-aneurysm capacity and work history. I can design, build, test, and deploy an enterprise-ready website in under 24 hours by myself, complete with marketing tools and high level copy – and I don’t even need to be fueled by Red Bull or Adderall to do it.
But in the throes of brain fog, fatigue, pain, and emotional distress about my disability, I was unable to do my normal work with any kind of consistency. When capacity returned, I would grind myself down trying to make the most of it until it disappeared again. I didn’t realize that this grind and collapse pattern was actually making my recovery take longer.
There’s a secret cost we pay for the dependency narrative. When we deny people access to things that would make their life easier, we make them even more dependent. They want to work. They want to do something with their life that they can be proud of. But when they have to fight and beg and negotiate just to get food, shelter, and water, they are deprived of the basic dignity that’s needed to create.
We lose so many hours of our day just trying to prove we’re not greedy or gaming a system for a whopping $200 in SNAP benefits to make a dent in an average monthly grocery bill of $550. Filling out endless forms and chasing down case managers and reviewers just to make sure that our last collapse doesn’t get us evicted.
When you move barriers out of the way, people do incredible things for each other. Servant leaders understand this.
The problem is that I can’t change the pace at which society stops getting in its own way. I’m dedicating my life to public policy on the idea that change can happen, but I know that it’s going to be a long, uphill battle.
That’s why I created FunctionalMe. I know how much data is collected on us through our devices and used to sell us products we don’t need. I want to use that data and put it back in the hands of the people it’s being collected from to actually help them.
We can use our data to figure out what our actual capacity is by learning and listening to signals we naturally generate just by interacting online. Are we doom scrolling more than usual? Are we reading emails while we eat lunch? Are we ignoring what our bodies really need and calling a once-a-month candlelit bubble bath self-care? Are we avoiding the conversations that would help us heal from our trauma instead of compounding it?
I’m still a hard worker. I’m back in school earning an associates degree in human services. This semester I’m taking six courses, serving as an officer in three clubs, working on my chapter of Psi Beta’s national research project, and completing fieldwork. All while building my app.
There are a lot of mood-tracking and productivity apps on the market. These apps usually focus on productivity and rely on gamification for motivation to do more. When I was recovering from my aneurysm coil, these features made me feel more broken.
It’s not that the apps were poorly built or even bad apps, they just weren’t built for brains like mine. They relied on gamification to motivate users and nudged me too much at bad times under the assumption that my days had consistent schedules and flows. They would make suggestions for self-care that didn’t match up with my sensory needs. And they rarely encouraged me to reach directly out to providers, friends, and family for support, instead encouraging me to post achievements that I wasn’t able to earn.
Eventually I realized that what I really needed was a way to measure my current capacity instead of relying on what I was capable of before my disability. I had a new normal that I needed to adjust to before I could work on improving.
That’s the gap that I’m trying to fill with FunctionalMe. Nothing existed that treated me with dignity or matched my reality, so I built something that does. An app that makes it easier to estimate effort and think about actual energy so that people who struggle can get through their days with less shame.
The grind-collapse-grind approach isn’t a sustainable way to live. I’m using research and insights from my own recovery to build something that gives users a way to build sustainable energy and effort over time, instead of waiting for the next high to ride until it’s suddenly gone again.
It’s been in development for over seven years. Now it’s ready for its first round of alpha-testing. I’m going to be recruiting 25 users to install and test out the app’s core features and gather some much-needed data. Once the app is stable and reasonably bug-free, I’ll bring it into beta testing.
In order to successfully run these tests and make the app free to use, I’m going to be looking for donors to help fund the server costs. If you’ve made it this far and want to be part of the FunctionalMe story, please consider donating or reaching out to me to find out how you can support the app’s development.
Together, we can help people find their most functional self.
